Thank you all... - Amyotrophic Lateral Sclerosis (ALS) Message Board

slaughter17 · 07-04-2003, 03:25 PM

My dad passed last week. June 25th 2003, at 4:35 a.m. He lived with ALS for almost 2 years. It has been hard for me the past few days. I want to thank you all for listening to me, and letting me speak out about my feelings. This is by far the hardest thing I have ever been through. I was very close to my father. The legacy he left behind will forever be remembered. He never complained once about what was happening to him. His courage has now been past on to me. I was there everyday by his side, even the morning he passed I hardly could let go of his hand.

I have learned so much the passt 2 years. The ALS section of this website has been great comfort to me. I came here to talk, to sometimes cry, and write how I felt. It has been a wonderful way of expressing my anger and sadness. I want to thank everyone here for the support and kindness I have recieved for the past 2 years. I pray that if ALS strikes you or a family member that peace and love may come to you. I will forever grieve for my dad, and for all people that this horrible disease affects. May god be with you every step of the way. As he was with me.

NBC · 07-04-2003, 11:48 PM

I'm sorry to hear about your dad. Mine passed in 99 just 1 year before being diagnosed. Mine father was also strong and courageous. I try hard every day to be strong like him. I still get angry and cry, but then I start to think that he wouldn't want me feeling sad all the time. So what I do is think about all the good times we had together and all the times he made me laugh. This way I'll remember him when he was strong and healthy instead of when he was sick. I know he's watching over me like your dad is watching over you. Take care.

goofboggin · 07-05-2003, 08:22 AM

Sorry to hear about your dad's passing. You have been such a blessing to so many on this site, I hope you are able to find peace. Your descriptions of him are so precious, thank you.

I am a first time poster, but have read much on this board.

My brother passed away from a multifocal neuropathy in 1998. He was first thought to have ALS, but his disease progressed within 1 year. He spent his last 7 months in ICU. It was/is very sad.

Lately I have been having odd symptoms and that is why I found this site. I have severe cramps in my feet, legs, forearms and hands. At night the cramps are the worst and I have to get up several times...vicious circle. At various times I have muscle twitches, you can see them jump in my arms and calves, this have slowed down in the last 2 months, and cramps have gotten worse. I don't fall, trip or stumble, like my brother did. I have increased saliva production and get choked on it often. I have increased mucous also, shortness of breath and fatigue. (but I smoke,,,,so?)

I have mentioned to my GP my concern about these disorders being similar to my bother's, but he says highly unlikely.

My brother's attending Neurologist at the VA hospital is now praticing in our town and I am thinking of making an appointment with him.

Any insights??? Anyone???

Thanks,

slaughter17 · 07-05-2003, 12:56 PM

My dad had symptoms very similer to yours. It went on for alomost 2 years before he finally got diagnosed with ALS. So he basically had the disease for 4 years or more and did not know it. My dad also had an increase in saliva and had a hard time swallowing towards the end of the disease. He had shortness of breath during the entire progression of ALS. I would recommend that you see your doctor and demand them to look into this problem. ALS can run in families, but it can also be sporadic. Most doctors will run every test in the world to rule out other diseases that mimic ALS. It is terminal. It takes a while before they even consider diagnosing. You should post more. Let us know how things go for you. I am sorry to hear about your brother. I thought I was prepared for my dad's death. But now realize that I am not, and nothing could prepare me for it. It is so final. Does it get any easier as time goes on? anyway...please let us know what happens at your doctor appointments.

goofboggin · 07-06-2003, 09:55 PM

Yes it does get better, it is very recent for you and you are expectedly grieving. Which is very good. You can never move on without going through that process. I have forced myself to think of my brother's life; not his illness and death.

He was a hilariously funny person and a talented artist, he was so loving and kind. He loved "shock value" and used it on all of us as often as he could. I love him! always will!!

About me....I will make an appt. tomorrow to see the neurologist. I know he will see me b/c my bro was one of his first neuro patients, he really cared for him, and still talks personally to my sister-in-law. He cried when my bro passed away,,,,rare for a doc.

You said my symptoms sounded familiar. Mine seem to come and go, during those first two years did your father's? I will have periods of my symptoms as I decribed above. Then go maybe a month before another bout of them.

I will keep you posted. Thank you for replying.